MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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BethA in VA's picture
Replies 1
Last reply 11/24/2015 - 9:57pm
Replies by: Anonymous

Help.  My first post was blocked as spam.  I'm not spamming anyone.  This is real.  Diagnosed in 1992.  Then again in 2004.  Use to be here alot.  Now 11 years later, have lesion on stomach about size of quarter.  It was water filled, now has scab and fibers in the center that are yellow and look like material.  I pulled them out with tweezers.  There was no end to it. 

Does anyone else have experience with a fiber area in a tumor? 

Melanoma tends to cut into your looks!!


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Anonymous's picture
Replies 2
Last reply 11/24/2015 - 8:38pm

I have failed Keytruda and the docs are now offering me Ipi/Nivo combo.

I am a little bit scared to do this combo as i had pretty bad GI issues with Keytruda.

Has anyone had success with the combo after failing Keytruda?

I am not sure if i have any other options anyway!




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Anonymous's picture
Replies 0

We haven't heard from Ginger888 for a long time. I hope she is doing well.

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Ginger8888's picture
Replies 9
Last reply 11/24/2015 - 5:09pm

I did my last treatment of Yervoy Aug 13th 2014 and so far all scans have been NED..Today i got my new scans and am stll NED..Whoot!!!

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Sce1's picture
Replies 10
Last reply 11/24/2015 - 11:49am

My 6 year old son has a mole on his back that has changed in the last two months. He has Ben Sen by a dermatologist in the UK. The dermatologist was not a paediatric specialist. At the start of the appointment she told us that she thought it was fine and she would make an appointment for 12 months. Then changed her mind and he is now seeing a paediatric dermatologist in 3 months. I'm really worried. The mole is small but has a light pink area spreading around it. I'm not sure if I should get a second opinion or wait for the appointment in three months? Your thoughts would be very much appreciated. 



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Anonymous's picture
Replies 19
Last reply 11/24/2015 - 11:37am

Let's get some positive stories for the newly diagnosed.

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Anonymous's picture
Replies 2
Last reply 11/22/2015 - 6:13pm

This is my first scan since diagnosed with micromets in one node. What can I expect? I've heard people say my pet light up like a Christmas tree. Does that mean I can see the screen during the test.

After the test do they just tell you your done and you can go or do they explain anything they find or see?

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kathycmc's picture
Replies 3
Last reply 11/22/2015 - 4:52pm

My daughter is 25 and was diagnosed with stage IIb nodular melanoma on her right neck in September 2012.  WLE with SNB in October with all clear.  In November noticed an enlarged lymph node just above surgical site.  FNB and CT scan showed melanoma so neck dissection was done in January with 26 nodes removed.  Only the one that was enlarged showed melanoma.  Stage is now IIIb.  Was offered and completed 3 rounds of biochemotherapy at Riverside, CA  Kaiser.  Has been NED since.  This morning she found a raised dark spot just above her right ear in the hairline.  She says it was flat and pink 2 days ago.  She will have it removed and biopsied tomorrow but I am wondering if melanoma can "grow" that fast.  

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Cynlee's picture
Replies 6
Last reply 11/22/2015 - 12:52pm


 I am just newly diagnosed with malignant's superficial spreading melanoma on the top of my left foot.   My dermatologist has sent me straight to a  surgical oncologist at a cancer hospital. I see him on Tuesday. 

Little background it was a "mole" that came up on my foot within the last 10 months. Pathology report says its level II, Breslow .35mm with both radical and Vertical growth phase. Mitotic <1. 

I can't get a good understanding of the report because everything on the internet is for places other than the foot. Even when I  registered on here they did not even have an option for me to say it was on the foot. It listed every other body part. 

Im pretty sure that with the pathology report it would not be all that bad if it was somewhere else on my body right?  Just how bad is it with it being on my foot?

thanks for any information positive or negative  


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yunielth's picture
Replies 2
Last reply 11/22/2015 - 7:06am
Replies by: yunielth, arthurjedi007

My sister was diagnosed last year with melanoma Stage 1A. More than a week ago she presented discomfort in his right knee. She went to the doctor and they did an ultrasound, the doctor diagnosed her synovitis. She continued with the discomfort and went back to the Doctor for an MRI, and the result was that everything was fine, but he make her blood tests. Not sure why he made her blood tests.
Could it be related with melanoma?
Thank you very much and greetings


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Cynlee's picture
Replies 1
Last reply 11/22/2015 - 3:26am
Replies by: stars


 I had a shaved biopsy done almost 5 weeks ago on the top of my foot . Came back invasive melanoma Clark level II and .35 mm. Both vertical and Radical growth phase.  I was just told the results on Monday night. 

I have a surgical oncologist appointment on Tuesday. There is now a very large  bruise on my foot growing form/around the spot. Plus I think I see the beginning of two more spots almost forming a triangle with the original spot at the top of triangle. The bruise pretty much engulfs one of the new spots and almost to the second one.  They look just like what the first one did as it came up on my foot in the past 10 months. 

Does anyone know what this bruise is? And can I be getting two more spots? 

Thanks for any answers. 

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sgrain's picture
Replies 7
Last reply 11/21/2015 - 8:47pm

I've been coming to this board since 1998 when I was first diagnosed stage 3.  As one poster below said, I haven't been on the board much because I've been busy living my life but I try to post when something significant (good or bad) happens.  This time it's something good.  I hope it gives many of you hope and insight to how these immunotherapies work.  Here's a brief history of my journey:

In 2012, MM was found in my right lung which was surgically removed.  In 2013, MM came back in both lungs.  I then tried the following drugs:  Ipilimumab (didn't work), Zelboraf (worked a little, another right lung tumor disappeared but then left lung tumors grew), Dabrafenib and Mekinist (didn't work), Keytruda - worked but with complications.

I was on Keytruda for 9 months.  While I was on it, my first 2 PET scans (3 months apart) were getting worse and a lot of metabolic activity but my oncologist said to be patient so I stayed on it.  At 9 months, I had GI problems which turned out to be 2 bacterial infections so I had a CT scan and stopped the Keytruda.  A month or so later, I had another CT scan which showed decreased turmor burden in the lung.  I then had a PET scan and got the same results, the largest tumor was almost non-existent and very little metabolic activity in another small tumor.  2 months later, PET scan showed No Evidence of Disease (although my Dr. said No Evidence of "Active" Disease).

Both Mayo and my Oncologist say it is likely that the first 2 PET were actually due to internal inflamation and not tumor growth.  When I got the infection and stopped treatment, things cleared up and we could actually see the tumors disappear.  I never thought I would see this day, being NED, but have hope for all of us dealing with this terrible disease.  Good luck everyone!

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Anonymous's picture
Replies 7
Last reply 11/21/2015 - 8:38pm
Replies by: Anonymous, Beehappy, MattF, arthurjedi007, Julie in SoCal

I have had four infusions of keytruda without really any side effects.

However in the last couple of days i have been having the urge to go to the toilet badly and only a bit comes out and my bottom or sphincer is really sore. I mean it is really sore after defecating.

In fact it is dangerous for me to pass wind as i might soil myself a bit..

I know i could use immodium but the thting is I am not really constipated in fact it seems i only get a bit out but i still have the urge to go to the toilet. I dont see my doctor for another week.

Has anyone else had similar symptoms and what have you done? 


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Gwenmorgan's picture
Replies 4
Last reply 11/21/2015 - 7:02pm

I have had one dose of ipi/nivo on 11/12 with no immediate reactions.  

Anyone else have strange allergic type reactions on everyday food/activities?

Sunday, I had leftovers for dinner (seafood)  and about an hour later my mouth started tingling and my upper lip swelled up.  Also, I had used the same face lotion I have for years.  I took Benadryl and it went away after 2 doses a few hours apart.  

Yesterday, I was searching for some positive data on lepto mel and my right eyelid swelled up.  I took some Benadryl again but not better yet.  Waiting for phone call from Clinic, it isn't an emergency or anything just strange, dry and itchy and swollen, like pollen got in there while sitting in my office typing.  Only one eye too (no makeup or anything)

no fevers.

I also have rosy cheeks like a painted Santa.  Braf/Mek caused bright rosy checks but I have been off that for a few weeks.

My  thought is that my overly sensitive skin has become ridiculously overly sensitive but I wanted to see if others had bizarre skin reactions?

I have 9 tiny brain mets, 5 treated with cyber knife but still there, much smaller than they were last Spring. 

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